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The mission of AGENDA is to improve outcomes for individuals with all forms of autism by fostering a genetics-first approach to autism and neurodevelopmental disorders research, and by strengthening collaborations among organizations representing genetically-defined disorders associated with neurodevelopmental disorders and autism.

We do this through:


Cooperation across groups and sharing of best practices, challenges, obstacles and how they were overcome. We do this through biweekly meetings. Members are transparent about their ongoing activities and what they need from each other. This avoids duplication of efforts and helps each organization focus on the families, rather than issues that are of concern across groups.


Collaboration on grants,  maintenance and expansion of group registries, and issues that affect people and families across disorders such as gastrointestinal and sleep difficulties, and understanding how the pandemic has affected these families.


Improved Communication to stakeholders around issues that are cross-cutting among genetic disorders. This includes sharing novel ways of working with families, advocacy, and holding joint information sharing sessions that are available to multiple communities.


Methods to improve clinical care for families of rare genetic disorders, regardless of the genetic diagnosis itself, starting from preclinical research moving to clinical trials.


Want to get involved with AGENDA?  Come join our online community to share and discuss on

Google Groups!!


Dr. Jeremy Veenstra-VanderWeele presents on "Pathways to Progress: Gene Discovery to Treatments" at the Autism Science Foundation Day of Learning 2016. Learn more about how genes can explain behaviors and influence the development of possible treatments.

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